Jackson Stormes:A Difficult and Amazing Journey

Living with Dravet Syndrome and all the complications

In the Press

BLAIRSTOWN -- Tears well up in the eyes of Jen Stormes as she talks about the progress her son, Jackson, has made since having major brain surgery in April.Jackson, age 9, was diagnosed with severe brain-related complications just four-and-a-half months after he was born. As a result, Jackson has had to contend with epilepsy and multiple disabilities. Something no mother wants to hear. But the entire process has made Stormes strong. And Jackson's most recent progress is something Stormes is more than happy to talk about.

"You can't even tell he had the surgery," said Stormes. "He's just completely improved."

The family moved from California two years ago after doctors there determined there was no more help for Jackson.

"He is complicated," said Stormes. "He has tried many different drugs."

In all, Jackson was taking some 35 medications for his treatment and all failed to work.

But Stormes believed that he could be helped. So she packed up and moved to New Jersey in the hopes of getting more treatment from doctors here.

"Shortly after we moved here he got worse," said Stormes.

But she kept faith and began taking Jackson to doctors here in New Jersey, who conducted testing trying to determine the best option for surgery on Jackson.

"They took out his right frontal lobe," said Stormes.

On April 22 at the Children's Hospital in Philadelphia, Jackson's surgery began. The two step process took three days to complete, but Stormes said he's back home and doing fine now.

But due to his life threatening illness, Make-a-Wish Foundation chose Jackson's wish to grant.

Make-a-Wish determines eligibility for granting a wish based on four criteria. First there is a referral by a medical professional, parent, or the children themselves. Children from age 2 to 18 who have not received another wish from another wish granting organization are eligible. Once that is determined, the child's medical condition is looked at to see if they truly have a life threatening medical condition. A Make-a-Wish Foundation team member is then sent out to discuss what wish may be the best option for them. Finally, the wish is then granted.

Stormes said the children are asked to choose two wishes, although only one gets granted. Jackson's wish for a swim spa was denied by the Make-a-Wish Foundation due to the cost, which is around $30,000.

"It's amazing the healing properties in the water," said Stormes.

She said Jackson wanted a swim spa because he loves the water.

"Water is the only place Jackson can be equal with his peers," said Stormes.

Stormes said Make-a-Wish grants the wishes of children, but in her situation, with an old in-ground pool in her backyard, Jen still has a problem.

"Even if they grant that wish, I still need to clear the ground," said Stormes.

But the pool is beyond repair for use, so instead the foundation is granting Jackson's second wish. However, in order to make room for the new play set that the foundation has granted, the land needs to be filled and level. But Make-a-Wish doesn't pay for preparing the land. They will only pay for the play set. Jen still needs help removing an abandoned pool in her backyard so that Jackson can have a place to play.

"We still need an electrical upgrade, someone to clear out the ground, put fill dirt in and compaction," said Stormes.

The single mother of two -- Jackson and his 12-year-old-daughter Sydney -- runs her own business, "Academy for Notaries," as a notary. She offers notary services both private and to colleges throughout the state.

"I transplanted what I did there (California) to here," said Stormes. "Everything I have goes into taking care of Jackson."

Stormes said with a child suffering seizures all the time and Jackson going to therapy some nine times a week in nearby Phillipsburg, she couldn't go out to work like most others. So running her own business was her only option. But the future looks bright now for Jackson.